Transitional Cell Carcinoma - spread and treatment advice

Hoping for some advice for my lovely Mum. In 2024 she had her kidney, ureter and part of her bladder removed due to stage 3 aggressive cancer in her ureter. This was followed up with chemo which sadly had to be stopped due to her remaining kidney struggling to cope. She managed a few months cancer free, but sadly recent scans have shown the cancer to have spread to local lymph nodes, and lymph nodes in her neck. 

We had a rather depressing Oncology apt this week. The consultant offered Immunotherapy but really pushed how this could reduce the quality of her life. We asked what would happen if she did not have this treatment and he said 'we will just scan again in 3 months and see what's happening with the cancer then'. 3 months seems like a very long time to wait for an update. We asked what a timeline might look like with no treatment and he said 'are you sure that you want me to answer this question today'. It all felt a bit cold and dismissive and I did not feel like Mum was being supported or made to feel like she had enough information to make a decision whether to have this treatment or not. 

We are all in shock and terrified of what the path ahead looks like. Mum is unsure whether to start this treatment as the consultant said it is only effective 55% of the time, and she is worried she could become very unwell. She has previously had an auto immune disease (Polymyalgia), so is extra worried. The consultant flagged very severe side effects.

We are wondering if we should get a second option with how to proceed? We know the diagnosis of her cancer will not change but we feel really floored and sort of 'left to it', which is a really horrible feeling especially knowing that she may not have long left.

  • Hi A-Russ and thank you for your post.

    I’m really sorry to hear what you and your mum are going through. It sounds very hard and confusing right now.

    Immunotherapy is a treatment that helps the body fight cancer. It can work well for some people, but not for everyone. The doctor was right that it can cause side effects, and these can sometimes be serious, especially if someone has had an autoimmune illness before. But many people manage the treatment with support from their team.

    If your mum decides not to have treatment, the cancer may keep growing. Doctors often do scans every few months to check what is happening. Without treatment, the cancer can cause more symptoms over time, but how quickly this happens is different for each person.

    Some people like to ask for a second opinion with another oncology ( cancer) team as they want to feel that they have left no stone unturned. Your mum could ask her GP or current specialist to refer her. We have some general information on our website about getting a second opinion.  It’s normal to do this if you feel unsure.

    It’s okay to ask for more information and to take time to decide what feels right for your mum.

    Please get back to us if you need any more information or support

    It might help to talk things through with one of our nurses on the helpline. You can call for free on 0808 800 4040, Monday to Friday, 9am to 5pm.

    Kind regards

    Tina

  • Thank you so much Tina for your response. It is hard for her to weigh up treatment that might make her very unwell with a 55% chance of it working vs just enjoying the unknown amount of time that she has left, especially as she is currently well with no symptoms. Will look into that detail on second opinion - thank you so very much. I will pass this phone number onto Mum too as it might be good for her to chat to someone as we all feel desperately sad, scared and overwhelmed.